Machado Joseph Disease (MJD) (spinocerebellar ataxia 3) is a hereditary neurodegenerative disease causing progressive ataxia and loss of mobility. It is the most common spinocerebellar ataxia worldwide. Among Aboriginal families of Groote Eylandt and related communities across Australia’s Top End, MJD is estimated to be more prevalent than anywhere else in the world. This study explored lived experiences of individuals and families with MJD to determine what is important and what works best to keep walking and moving around. A collaborative qualitative exploratory study, drawing from constructivist grounded theory methods, was undertaken for data collection and analysis. Semi-structured in-depth interviews were conducted with individuals with MJD (n = 8) and their family members (n = 4) from the Groote Eylandt Archipelago where ~1500 Aboriginal people (Warnumamalya) live. Interviews were led by Warnumamalya community research partners in participants’ preferred language(s). Participants described their experience of living with MJD, from ‘knowing about MJD’, ‘protecting yourself from MJD’ and ‘adjusting to life with MJD’. While the specific importance of walking and moving around differed widely between participants, all perceived that walking and moving around enabled them to do what mattered most to them in life. ‘Staying strong on the inside and outside’ (physically, mentally, emotionally, spiritually) was perceived to work best to keep walking and moving around as long as possible. A framework that included personal and environmental strategies for staying strong emerged: ‘Exercising your body’, ‘having something important to do’, ‘keeping yourself happy’, ‘searching for good medicine’, ‘families helping each other’ and ‘going country’. This study, the first to explore lived experiences of MJD in Australia, highlights the importance of maintaining mobility as long as possible. Strategies perceived to work best address physical and psychosocial needs in an integrated manner. Services supporting families with MJD need flexibility to provide individualised, responsive and holistic care.
Rehabilitation services need to support individuals with SCI to find meaningful employment and to engage in activities that provide them with a strong reason to participate.
Ronny (2020) The effect of exercise on high-level mobility in individuals with neurodegenerative disease: a systematic literature review. Physiotherapy, 106 pp.
Physical activity has positive health implications for individuals living with neurodegenerative diseases. The success of physical activity programs, particularly in culturally and linguistically diverse populations, is typically dependent on their alignment with the culture, lifestyle and environmental context of those involved. Aboriginal families living in remote communities in the Top End of Australia invited researchers to collaborate with them to co-design a physical activity and lifestyle program to keep individuals with Machado-Joseph disease (MJD) walking and moving around. The knowledge of Aboriginal families living with MJD, combined with findings from worldwide MJD research, formed the foundation for the co-design. An experience-based co-design (EBCD) approach, drawing from Indigenous and Participatory methodologies, was used. An expert panel of individuals with lived experience of MJD participated in a series of co-design phases. Prearranged and spontaneous co-design meetings were led by local community researchers within each phase. Data was collected using a culturally responsive ethnographic approach and analysed thematically. Sixteen panel members worked to develop the ‘Staying Strong Toolbox’ to cater for individuals with MJD who are ‘walking strong’; or ‘wobbly’; or ‘in a wheelchair’. Based on the ‘Staying Strong Framework’, the Toolbox was developed as a spiral bound A3 book designed to guide the user to select from a range of activities to keep them walking and moving around and to identify those activities most important to them to work on. The ‘Staying Strong Toolbox’ is a community driven, evidence based resource for a physical activity and lifestyle program for Aboriginal families with MJD. The Toolbox provides a guide for health professionals and support workers to deliver person-centred support to Aboriginal families with MJD, and that can be modified for use by other families with MJD or people with other forms of ataxia around the world.
Objective: To evaluate the development and implementation of the Allied Health Rural Generalist Program, a two-level online post-graduate education program, which includes Level 1, an entry-level non-award pathway program, and Level 2, a Graduate Diploma in Rural Generalist Practice. Design: A convergent mixed methodology evaluation in two overlapping stages: a process evaluation on quality and reach, together with a mixed method case study evaluation on benefits, of the program. Setting: Rural and remote Australia across ten sites and seven allied health professions: dietetics; occupational therapy; pharmacy; physiotherapy; podiatry; radiography; speech pathology. Participants: Process evaluation included 91 participants enrolled in all or part of the Rural Generalist Program. Case study evaluation included 50 managers, supervisors and Rural Generalist Program participants from the ten study sites. Interventions: The Allied Health Rural Generalist Program. Main outcome measures: Process evaluation data were derived from enrolment data and education evaluation online surveys. Case study data were gathered via online surveys and semi-structured interviews. Quantitative and qualitative data were collected concurrently, analysed separately and then integrated to identify consistency, expansion or discordance across the data. Results: The Rural Generalist Program was viewed as an effective education program that provided benefits for Rural Generalist Program participants, employing organisations and consumers. Key improvements recommended included increasing profession-specific and context-specific content, ensuring Rural Generalist Program alignment with clinical and project requirements, strengthening support mechanisms within employing organisations and ensuring benefits can be sustained in the long term. Conclusion:The Rural Generalist Program offers a promising strategy for building a fit-for-purpose rural and remote allied health workforce.
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